"Seven or eight years ago, if you Googled Trisomy18 (shorthand for the presence of a third chromosome on the 18th pair), all you would find would be autopsy photos," says Deborah Bruns, assistant professor of special education.

"We hope that our survey will generate data [for] both professionals and families to offset that gloom-and-doom scenario. There are children who survive, and they're doing well."

Children with trisomy disorders are severely disabled. They have cardiac, respiratory, and gastrointestinal problems, and most don't make it to their first birthday. Through extensive networking, however, Bruns found many children who defied the stereotype, some even living into their preteen years.

To help these children function as well as possible, parents need resources.

"Because doctors and other professionals saw these children as 'hopeless' cases, medical help and other interventions and services often weren't readily offered or given," Bruns says.

With some funding from several nonprofit trisomy support groups, she set out to change that with the TRIS project ("tracking rare incidence syndromes"). The project's website offers information concerning family services, treatment options, educational assistance, and more.

The online TRIS survey is the project's foundation, collecting information on parents' demographics, their experiences with pregnancy and birth, family relationships and support systems, medical conditions and therapeutic needs, specialists, educational programming, and developmental milestones.

That last feature should provide both help and hope to parents as survey results are analyzed and information on the website updated.

"I want to give these kids credit for what they can do," says Bruns. "If nothing else, this will let families have a truer picture of what awaits them, and it will give medical, educational, and therapeutic professionals a better understanding."

—by K. C. Jaehnig, Univ. Communications